Tuesday, November 29, 2011

All Turkeyed Out!

Well, we made it through Thanksgiving! It was a very quiet day since my fiancé is still in recup mode after the surgery.  I had to buy a huge turkey just for our small family 'cause that's all they had. But managed to send the brother and my fiancé's daughter home with "care packages" which they LOVED. My fiancé felt bad that he couldn't do anything this year. I prepared the entire meal as well as did the cleaning and set-up that a holiday usually requires. I'm exhausted but I tried to see it all as my workout!  ; ) 

The food was delicious; everything was timed perfectly; the company was top-notch; and everyone enjoyed their day. My fiancé was completely knackered by the end of the day. It was the longest he'd been up and active since before the surgery. But we made sure he rested the next day and that did him good.

We had a follow-up visit with his Neurosurgery nurse yesterday (f-u with doctor in 2 more weeks) and she said he was doing well. V disappointed that he hasn't quit smoking, but she kind of joked about it a bit to not make it so serious. They quickly discussed his possible neck surgery (yes, there are 2 more bulging discs there) and the nurse said there is no way the doc will do surgery if my fiancé is still smoking. Period.

Anyway, she said he's progressing nicely and is not surprised at his current level of pain, so that made me feel better. He's been experiencing a sort of paralysis periodically, when he goes down or up the stairs. The nurse was a bit concerned, but felt that could be part of his recovery (everybody IS different). Hoping the PT can work with him on that. BTW, the PT is wonderful. A guy named John who my fiancé likes and gets along well with. Hoping he can encourage my fiancé with his exercises and help him stay positive.

Now, regarding the Hep C.....still doing v well I have to say. The main symptom that we're currently seeing is that pesky hair loss...and now he's taken to wearing a baseball hat, even in the house. Also, the anorexia has kicked in (from the Riba) and he's lost 6 pounds in about a week. Doctor Goldberg said that now he's off the Incivek, the anorexia may start to rear its ugly head, and so, it would seem it has. My fiancé's self-esteem seems pretty low these days, too. He's also not sleeping well.

Current weight = 182

Now trying to gear up for Christmas. Might have to go out and get the tree by myself this year. He's hoping that he'll be feeling well enough to come along. We'll just be going to the Home Depot where we got the tree last year; a small one ... just enough to light up and enjoy for the holiday!

Monday, November 21, 2011

Triple Threat Week 16 + Post-Surgery Week 1

First of all, I can't believe it's been one week since my fiancé's surgery. This week has gone by so quickly, yet so slowly at the same time....weird. Surgery went well; then one night in hospital. He was so ready to come home the next day, which was a good sign. The only issue was that, once he was given the okay to leave, not one nurse came and saw him to either check on him or give him meds. He went 4 hours without meds (and he's on some narcotics due to previous back surgeries). This would be evident by the end of the day.

We finally left at 2pm and got him home and comfy...ish. He managed to get to the bedroom and lie down for a few hours. Turns out that was not the right thing to do. He went right to sleep, without walking around much or using his new breathing excerciser they give to everyone who's had anesthesia (the night nurse called it a "bong" ... to help indicate which direction the breathing should go --- SHE was awesome...thanks, Cathy).

Within 2 hours, he complained of being hot and then proceeded to stress about it. His temp went up to 102; they told us if it went up to 101.5 we should call the doc's office. However, this was about 6pm and the office was closed (I later learned there's someone answering the line 24/7 and could connect us to a doctor immediately). We tried cold compresses, ice bags, turned on every fan in the apt...to no avail. He also had very bad tremors in his arms and hands which scared me. Finally, realizing I was not equipped to handle things, I called 911. They were here within 5 minutes, took a look at him and suggested going to the ER. They wanted to go to the Mt. Auburn hospital, which is the closest to us, but we insisted on Lahey Burlington since he was just discharged from there. They got clearance to do that and off we went, my fiancé in the ambulance and me in my car. I actually passed the ambulance on the highway and got there just before they did!!

The EMTs had hooked him up to an IV in the ambulance and by the time they got him settled in the ER, his temp went down to 98.6. My fiancé's tremors, come to find out, were due to the fact he never got his pain meds today. He had his regular morning meds, but nothing before being discharged and only minimal once at home. So, basically, he was having withdrawal from narcotics. That was pretty scary I tell you!

We were there for 5 hours and his temp went down to 98.5, then as they discharged him from the ER at 11pm, his temp went up to 99.5. I was a little nervous that it had gone up a bit, but we went home after the ER doctor (Dr. Gendreau) said all his blood tests and the x-ray they took were normal. He added that if my fiancé's temp went up to 101.5 again, we should come right back in to the ER.

So, at 1:45am his temp hit 101.8, so off we go. This time, they put hime in a bed and left him there. No one took his temp, BP, or any vitals. At 3am they said they were re-admitting him to the hospital as a patient and were just waiting for a bed. So they moved him over to a corner cubicle and shut the lights and the curtain. He slept right away, but I was awake for another hour or so. I nodded off in the chair and waited for daylight.

When 7am came, I talked with Patty, the day nurse, and she sorted us all out. She seriously got the ball rolling and even managed to get his surgeon to come down to the ER to see him! After a long chat, the surgeon still wanted to admit him, but my fiancé said he'd just like to go home, with the promise that if the temp went up again, we'd call.

He rested at home, but managed to do a bit of walking and made sure to do his "bong" exercises as scheduled. He's been doing a bit better every day. Visiting Nurses are going to start coming as of today, so that will help him a lot, I think.

The bad news: He started smoking again. He was freaking out on Friday night about nothing and said I was the cause of his stress...."leave me alone" were his exact words. He found the cigarettes he'd hidden and went outside to smoke. Granted, he's only smoking a few cigs a day, but that's more than none.
The good news: He's asked for help to quit smoking...something I NEVER thought I'd hear! So, we're going to get help for him on that. So glad.

The next few days were mostly good. He got stubborn and went for a few short walks on his own....didn't tell me he was going, just kind of left while I was in the bathroom or the kitchen. That bothered me, but I didn't say anything. Gotta pick your battles, right? Then, the next day he paid the price because he was very sore and tired. I feel like he's getting there, though. The pain is different; no more fevers; he's sleeping better.

Thursday, 11/17, was his 16-week follow-up with Dr. Goldberg. Great follow-up! The Doc was surprised to see my fiancé there just the few days after surgery. It was more of a meeting with Q and A than a doctor's appointment, but that's a good thing. We gathered and gave info and Dr. G is still pushing for the full 48 weeks of treatment. Maybe...MAYBE we can go 36 if all the signs are right. The fact that my fiancé is a Stage 3 has a lot to do with the length of treatment, so we hang in there! The Doc also mentioned that now that he's off the Incivek (and off the 20g fat snacks), he should begin to lose more weight. Apparently Ribavirin causes anorexia and therefore the extreme weight loss.


Also, on Thursday, blood tests and yes, the transfusion. I think it was mostly due to the surgery and minor loss of blood, because they only gave him one unit. And that went well.

Whew!  Sorry for the long posting, but I had to get that all out!!  Looking forward to prepping for Thanksgiving. Even though I'm still without a job, we truly have some things to be thankful for this year, because everyone's healthy!

I hope everyone enjoys a beautiful, joyous Thanksgiving. Remember to eat LOTS.... I think it's the law now!   ; )

Monday, November 14, 2011

Surgery Day

So much has happened in the last few days since my last post. It almost feels like "A Christmas Carol" and my fiancé is Ebenezer Scrooge! Was he visited by 3 spirits one night while sleeping? I don't know. I do know this:
  • He's sweeter than he has been in a few weeks    : )
  • He's taken himself off of most of his pain meds (and there were some scary withdrawal symptoms during the weekend)
  • He's STOPPED SMOKING!!!!!!  (yay)
Initially I think all the advice and concern from the nurses and doctors on Wednesday went in one ear and out the other, but maybe some of it stayed in his head and made him realize what he had to do. He's one of those people who HATES being told "you have to do this" or "you have to do that". If it's something that's HIS idea, he takes hold and runs with it. In the long run, I suppose it doesn't matter whose idea it was.........he's made a HUGE change in his (and ultimately our) life!

Surgery today.....I'm letting him sleep as long as possible, because he can't eat anything. At the hospital at 10:30a and surgery at 12noon. One night in hospital and home tomorrow.

I have been praying (not that THAT's worked for a long time) that his pain from the herniated disc is gone immediately. He'll have some residual pain, but I know he can deal with it.

Am looking forward to my first good night's sleep in I don't know how long. It will be our first night apart in two years, but it will be good for both of us. I hope this is the start of a new chapter in our life together.

Thursday, November 10, 2011

The Sh*t Has Hit the Fan

Several pre-op appointments yesterday....went fairly well. Everyone who saw my fiancé asked about his smoking and all suggested he quit, stressing how important that was not only for the surgery, but also for his quality (and length) of life. In one ear and out the other. After speaking with the Neurosurgery nurse, Tracy, who'll be in the OR with him, I really thought she got to him. She got to me for sure. She told him that if he keeps smoking, he's going to be coming back for surgery on all the remaining discs in his back. Granted, this situation was from the car accident, but he doesn't realize the connection between smoking and the deterioration of the human body, or between smoking and pain.
We had been planning to drive up to NH to get his cigarettes (they're much cheaper up there...and no tax of course), but I thought the conversation with Tracy would've changed his mind. Imagine my surprise when he mentioned he wanted to go up there as soon as we finished with his chest x-ray (last thing on the pre-op list), I went numb. We were civil to each other on the ride up ... I knew he could sense my disappointment ... but I tried to push that all away and get on with the day. One of the nurses thought he should meet with his Primary Care doc before the surgery and managed to get us an appointment later in the afternoon. He was happy....he could talk to her about getting more meds to deal with the pain, since he'd taken just about all his prescribed pain meds for the month.

While meeting with the PC, she reviewed all meds, gave him a quick physical exam and then she asked about his smoking. The hammer fell. She basically told him if he continues to smoke, he will die. Plain and simple. With all his other health issues, I would agree that smoking compromises everything. He was supposed to stop smoking at the beginning of Hep C treatment and that deadline made a nice whizzing sound as it went by.

Then the meds discussion. She couldn't give him more because he'd overused them and that's just the way it is. She read him the riot act on that and came right out and asked me what I observed. I lost my composure at that point and told her what I knew; I know she saw how scared I was for him. She told him outright, he's going to have to find a way to deal with the pain until the surgery and hopefully, make it through the rest of the month. Once the surgery's done, that acute, stabbing, hot knife pain will be gone, but the residual pain in his leg will be like a headache or a black-and-blue, so I hope that can be managed with Tylenol.

He smoked several cigarettes on the ride home from the hospital, and not one word was spoken; I can see that familiar pattern of turning inward; a slight depression I'll keep an eye on. The minute we got home, he jumped into bed and went off to sleep. It was an exhausting day. I sat in a chair in the living room and promptly fell right off myself. Woke him up at 8pm to take his Riba and all he could stomach for food was two bananas. That was fine (thank God we're not in Incivek Land anymore .. a 20g fat snack wouldn't have made any kind of appearance last night). I don't know what he took for pain, but I don't think it was much. It was lights out for the night at 10:30pm (HUGE surprise) and NOT ONE CIGARETTE since we got home (an even BIGGER surprise). Not sure how long that will last. Maybe he finally got scared straight.

I know he should quit smoking for himself, but all I can (selfishly) think is, "Why doesn't he care enough to take care of himself for US?" I thought finding each other after 30 years apart would be enough to make him want that. I guess it's not. The way things were when we left the hospital drilled into my head that it was okay with him if we spent the rest of our lives together with him in a wheelchair and me wheeling him around everywhere. What will happen the day he truly can't walk? Or worse, if I have to bury him sooner than either one of us plans. I'm so scared about that, but I have to push those thoughts out of my head or they will consume me.

Today, it's blood tests to see if he needs a transfusion and then a visit with his Hematologist to review his blood levels and a final check before surgery.

Pegasys shot on Tuesday night was fine; no symptoms/side effects yesterday at all, so ... yay.

He's still losing hair; it seems to have gotten worse over the last week, and I'd be will to lay money down that that's not only from the treatment, but also from the smoking, worry, and stress over the upcoming surgery.

One weird note from yesterday regarding his weight. In the first visit in the morning, his weight was 194.6; at his PC visit in the afternoon, his weight was 188.6...he lost 6 pounds during the day.

Wednesday, November 9, 2011

Countdown to Surgery

Well, to catch up, Hallowe'en was a blast! It was fun having everyone sit down to a fun dinner and have some laughs.

In all the excitement, I forgot to get a pumpkin and anyone who knows me would say "impossible!' to that, but there it is. So, I had an orange, and scraped that out, carved a few features and stuck a tea light in it!

Then for dessert, we had black cat cupcakes!

In the week-and-a-half since Hallowe'en, it's been a struggle, for everyone. First, regarding my fiancé's Hep C, things have been great. Really, no symptoms, unless they're being masked by the tremendous pain he's going through because of his back. But even if that's the case, they would be very minor. Things like his sense of smell (there was a while there I couldn't run the dishwasher because the smell of the detergent made him sick) and taste (that horrible metallic taste) are back to normal, which is great. The only real side effect I can see is his hair loss. Now, you have to understand that he's a musician and back in the day, he played (guitar) with some very prominent rock musicians, so his hair is part of who he is. So, it's pretty depressing for him to notice that hair loss. I keep reminding him that it WILL grow back, and that does help in the moment.

Regarding the anemia: it's been better since being off the Incivek, but he's still had a couple of transfusions since then. He's scheduled for blood tests tomorrow to see if he needs one this week (he was cleared last week and didn't need one then).

Now, to his back. The pain from the herniated disc had gotten so bad, that he finally relented and let me take him to the ER and then an emergency appointment with his neurosurgeon. The doctor said the best course was surgery, but he needed a medical clearance from Dr. Goldberg because of the Hep C. I remember reading that you weren't supposed to have surgery while on treatment and I believe Dr. G said that same thing just as my fiancé began triple therapy. But while at the hospital, we went down to Dr. G's office to have a chat. All the nurses there basically said, NO, he can't have the surgery while on treatment and he can't stop treatment. I wanted to die right then and there and knew there was no way he'd last another 12 weeks. They said they'd give Dr. G a message from me and have him call me back. Two days went by and the pain became worse and worse. My fiancé got weaker in his legs and because of that, actually fell down the stairs on his way out to smoke. I know....this WOULD be the perfect time to quite smoking, but that's not in the cards right now. He scraped his head on the metal railing and he has a small patch on his head that looks like a skinned knee. I felt so bad; I usually watch him go down the stairs then help him back up the stairs, but this was one of his "independent, I don't need anybody" days. (Side note: he fell again two days ago while trying to put his shoes on. I'm so worried, but he won't let me help. I get it.....I really do, but I had a talk with him about how he needs to let people help him at this stage, regardless of how independent he's been his entire life. He now has people around him who love and care for him, so he's gotta back down and let us in. I think this time, he listened.)

Anyway, the doctor called and said he didn't have a problem with surgery! I think maybe it was just while he was on the Incivek that they were not wanting surgery. Bottom line, surgery is on......next Monday, November 14th. The only problem is getting him there as pain-free as possible, which is going to be tough because he's already taken almost all his monthly doses of pain meds. He'll be fine once in the hospital and I imagine they'll give him something to take home for the surgical pain. Hopefully, there'll be no more pain from the herniated disc so he won't need all those pain meds he's been taking. I pray that all will work out.

The sad thing is watching this man, the strongest man (besides my brother) I've ever known; always in charge, always in control, become almost child-like. He needs help everywhere; when we go to the hospital, he's in a wheelchair. At home, he uses a cane/walker and I help him go down and up the stairs. He's extremely weak, physically, mentally, and emotionally and the pain is making his mind go into very dark places.

All I can do is pray. I look forward to the surgery and pray that that gives him his much-needed relief. Today is pre-op meetings, so we'll have more details on what's happening by this afternoon.

The caregiver is hanging in there. I do what I can, not knowing the pain he's in but understanding it and trying to be there with all the love I have. He had such a beautiful spirit and I saw that the minute I met him over 30 years ago. He's the Light and Love of my life.